According to a recent article, Canadian actor Cameron Mathison opened up about dealing with Legg-Calve-Perthes disease throughout his childhood. Perthes Disease Perthes disease is a condition that affects the hips…
In the years leading up to menopause (perimenopause), migraines and headaches become increasingly common. Pair this with mental fogginess and memory issues, changes in mood, altered eyesight, sleep difficulties, and…
A recent article shared the story of one family’s journey with multiple family members being diagnosed with progressive familial intrahepatic cholangitis (PFIC) after years of medical issues. Progressive Familial Intrahepatic…
According to a recent article, a man in Bar Harbor has the entire community behind him as he searches for a stem cell donor for himself and others battling cutaneous…
According to a recent article, a cyclist who was closely affected by alpha-1 antitrypsin deficiency (A1AD), is biking across Australia with his good friend to raise awareness and money for…
In Part 1 of our interview with Lorrie and Stewart Altman, we discussed the journey to the Late-onset Tay-Sachs disease (LOTS) diagnosis, how Lorrie and Stewart's outlook shaped their lives,…
CURE® recently conducted an interview with von Hippel-Lindau (VHL) patient Joseph Heisler and his mother, Marirene. Joseph’s father was diagnosed thirty years ago with the genetic (inherited) disease. Shortly thereafter…
Continued From Part One Case #2 The second case involved a sixteen-year-old male in the ICU unit with suspected bacterial hypoxic respiratory failure associated with viral pneumonia. The teen’s history…
A group of autoimmune diseases called anti-neutrophil cytoplasmic autoantibody (ANCA)-associated vasculitis (AAV) is the subject of a preprint under consideration at Pediatric Rheumatology. ANCA-AAV is characterized by damage to small…
If you would like to read the first part of this interview, please take a look at Part 1 here. In the first part of the interview, I spoke with…
Betty Vertin recently wrote an article discussing her experience as a parent of a child with Duchenne muscular dystrophy. She shares the lessons she has learned in order to…
According to a recent article, a woman dealing with chronic fatigue and multiple UTI’s was not diagnosed with ovarian cancer until she was rushed into the hospital after collapsing. Ovarian…
As many of you know, Rare Disease Day 2022 is coming up at the end of the month. Celebrated on February 28, Rare Disease Day aims to raise awareness and…
An article recently came out highlighting one young woman’s struggle with the rare cancer rhabdomyosarcoma. Rhabdomyosarcoma Rhabdomyosarcoma is a rare form of cancer that develops in soft tissue. It…
In a recent article for Hemophilia News Today, Jennifer Lynne, who is diagnosed with both von Willebrand disease and hemophilia B, stresses the importance of remembering women can have hemophilia…
Rare disease patients know what it's like to go without a diagnosis despite enduring symptoms. Doctors often don't recognize the disorders for a number of reasons, whether that's the similarity…
A recent article showed how the parents of a little girl with the rare blood disorder Von Willebrand disease are spreading awareness about the importance of donating blood. Von Willebrand…
Just about two years ago, Jane Warrimer began experiencing abnormal menstruation. Her period was no longer regular; her bleeding lasted for weeks at a time. After pursuing an IUD, Jane…
Our parents can be some of our strongest supporters, and Hawken Miller knows this firsthand. He recently published an article in Muscular Dystrophy News Today detailing the love and support…
Seven years ago, at just 15 years old, Lauren Blake was diagnosed with gastroparesis. This condition makes it difficult for Lauren to keep down her meals or, really, to eat…
Julia Lefelar, a resident of Gaithersburg, MD, was telling a friend about her years of seeing different doctors trying to find the cause of her illness. After a while, her…
Oscar Warrent, a toddler from Norwich, England, has been through a lot in his two years of life. About three months ago, he was diagnosed with rhabdomyosarcoma, a rare form…
This week the Guardian reported that a pig’s heart, which was genetically modified, had been transplanted into a patient by doctors who were trying to save his life. The patient was…
On January 12, 2022, posts shared on Facebook and Instagram announced the passing of 15-year-old Adalia Rose Williams. A Youtube and Facebook star, Adalia had over 16 million followers collectively.…
When she was born, Savannha Aretino was diagnosed with hypophosphatasia, a rare genetic disorder characterized by bone and teeth development abnormalities. Now, twenty-three years later, Savannha is working to not…
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